I have never really understood why the body finds it so hard to adjust to a lower dose of pred before you get to level when the adrenal gland needs to wake up. Is the pituitary gland affected by steroids? I started at 60mg two years ago for GCA and have found it so difficult to taper all the way down, now at 8mg, despite going very slowly.
Would be really interested to have your comments.
Sho Sho
Sorry you are having such problems I too started on 60mg for GCA in Dec and thankfully down to 9mg now Just praying the good progress continues. I hope things begin to improve and sorry not to be much help.
Hi Sho-Sho,
I’m surprised you seem to be having so much difficult especially at higher doses - usually it’s relatively easy for those of us with GCA until you get down to about 15mg.
Perhaps you’re one of those unlucky people that don’t get the full benefit of your Pred dose, or you are trying to do too much on the dose you’re on!
You still have the underlying illness, which is serious, as you know the Pred is only working on the inflammation caused by GCA - not on the GCA itself.
I would say getting to 8mg after two years is about average, but from now on it may get more difficult.
Thank you for your comments, I totally agree about not doing too much, if I do I feel seriously rubbish for a couple of days and just have to rest. So frustrating - have to keep reminding oneself that eventually the inflammation will recede.
Hi again,
Yes the inflammation will recede but only when the GCA itself goes into remission. For example mine lasted about 5&half years - 18 months undiagnosed and a then a further 4 years on top. So as PMRpro says 2 years in, your GCA is still “there”, and whilst it is you need to manage it, not let it manage you!
Very good tip re managing ones GCA not the other way round, will definitely remember that.
Thank gou
I was diagnosed in May with PMR/suspected GCA (jaw problem very stiff and could only open mouth to eat breakfast a little way) I saw my rheumatologist for the first time last week. I would l be interested in your comments. I was on 40mg pred and he wanted me to get down to 30mg pred - then follow this plan:-
30mg OD 1 week
20mg OD 1 week
15mg OD 2 weeks
12.5mg OD 2 weeks
10mg OD 1 month
Reduce 1mg/month That's it.
Personally would say too quickly. I reduced at monthly intervals (occasionally slightly less at higher doses).
30mg
25mg
20mg
17.5mg
15mg
12.5mg
10mg
You might manage the earlier doses at 2 weekly intervals, certainly not weekly, and better at monthly.
I guess he’s trying to avoid side effects, but the GCA needs to be controlled, otherwise you are going to flare - and there’s no point in that.
Goodness that regime sounds REALLY 'fast' to me Beryl - but you will soon know if it is and be back to your Rheumy - I am stunned many medicos STILL don't seem to realise the duration of PMR and or GCA which is frequently YEARS - often around 4 or even more - they seem to think we will all be 'better' overnight - as if we all don't 'wish' that WAS the case !
There have been numerous posts on tapering and what has worked or not on this forum and they are eye-opening to say the least as is the most recent research reading recommended by people like PMRpro. After 18 months I am still at 14.5 mg for GCA and expect when I reach about 10 mg - even if my 1mg per month reductions 'work' - that I may even be on that for sometime. Anyway let us know your 'progress' and all the best
Rimmy
What do you call slowly? Do you mean small steps down or big gaps between? And did you go from every day one dose to every day a new dose overnight?
But this may help explain - it's a bit long to write it myself, so this is easier:
medicinenet.com/steroid_wit...
Everyone is different - and some people are very sensitive to the changes.
When I got to 30 I went down by 2.5 over two weeks, got stuck at 20, put on methotrexate, but after 4 months taken off it as feeling so ill - a year ago I was on 17.5 and have really struggled down to 8 where I have been for 6 weeks, told to hold that for 8 weeks until hopefully I adjust to it (have been reducing by half a mg per month from 10).
For some people that is slow - but not everyone. And to get from 60 to 8 in 2 years is actually pretty good going, GCA lasts more like 3 to 4 years - ask those on here who have been there.
Thanks for your help - just one more question, is the pituitary gland also put to sleep by the pred? Bit ignorant about how the body ticks!
Not really, come to that nor are the adrenal glands really "put to sleep" - what is really happening is that they don't NEED to produce the natural corticosteroid cortisol because there is plenty of the artificial sort in the form of pred available. But when you keep changing the dose of pred at intervals, all the other things also have to readjust their amounts to keep the body ticking over normally. Sometimes they get back in balance quickly - and sometimes not.
It is all very complex - probably the only people who understand it are endocrinologists and sometimes even they seem to struggle! I did know it all fairly well once - but not having needed it for the last umpteen years it's all rusty too!
I am kind of where you are; at 8 mg since early April. Off Methotrexate on advice of 2 physicians. Now with an unrelated problem(I think unrelated) -hiatal hernia (paraesophageal) caused partial lung collapse on scan. Feel stuck in mud. If rheumatologist doesn't raise my dose, will do it myself and continue searching for a doctor who truly understands.. Highest dose of 16mg. was doing the trick until tapering began.
Now I feel, it's almost like living with a virus for life. I am anxious, I won't have strength to get there tomorrow.
I think difficulty tapering steroids is due to a rebound effect when the dose is reduced or eliminated. I had a bit of a dress rehearsal for pred tapering when years ago I was prescribed hydrocortisone ointment for dry itchy hands. The ointment cleared up the condition like magic in a couple of days, but when I stopped using it the condition came back worse than ever and had spread. On my own I figured out that the ointment had to be gradually phased out and simultaneously replaced with something else to counteract the dry skin. It took a long time to find the "something else" but eventually I did. I switched to a less strong otc hydrocortisone ointment and used both food grade hemp oil and another cream containing shea butter and eventually didn't need the hydrocortisone any more. I think pred is kind of the same, only there really isn't any reliable alternative, we just have to reduce our dose very carefully so as not to trigger the rebound effect.
Personally, I am suspicious of of supplements. It's an unregulated 60 billion dollar industry. They are costly. However, for inflammatory conditons, a tonic of ginger and tumeric , both proven to be anti-inflammatories, might be worth a try. Eating blueberries is great, but I wonder how many pounds you would have to eat to get a noticeable effect??? But when taking serious meds, why cloud the picture of what is going on.?? The Mayo Clinic recently published a little article recommending only Vit D, calcium and B12 for the average person over 50.
Only we aren't average. The other confounding fact is the deterioration of our food supply. Anyone living in North America needs to look at their food with suspicion now. Can't speak for other parts of the world of course.
No, we aren't average; I would say the same about food and supplements, what should we be eating? We eat organic food, bottled water, but with ground water contamination and illnesses affecting fish and farm animals, nothing is really safe; we are trusting in regulatory agencies that don't do their jobs, or a met with resistance by superiors. Unless we can see how our food chain starts and how it gets to table, we really can't know.
Sorry, am feeling bitter today.
Interesting: only Vit d, Calcium and B!2 for people over 50? Do you have the link to that article. Many of us here also take magnesium.
Yes - but not all continuously, I only use it occasionally and if I develop cramp. And as you point out - we aren't average. We take pred and pred increases shedding of magnesium through the kidneys...
Sorry, I don't; it was a piece by the Mayo Clinic's medical editor in the Mayo clinic's newsletter. How many mgs. of magnesium do you take?
I would like to have a nutritional blood study done. My daughter was feeling so ill after the birth of my granddaughter; she has RA, she went to an integrative med doctor who offered the test. This was 11 years ago, but the deficiencies were astounding; of course' she had just had a baby very prematurely . But the test was really revealing. She did need prescription doses of several nutrients. Mother and now 12 year old baby doing well.
Supplementing is fine if it's based on nutritional blood testing which has revealed what is needed and what is not needed.; e.g.. too much Vit. D can be toxic and so on.
Tapering is such an individual; have GCA/PMR; the only objective proof of GCA was loss of vision; thankfully transient ; proved by orbital Doppler to be a central retinal vein occlusion. Am on 8 mg. of Medrol; given how I feel, it's not enough. Severe headache today.
To get anywhere, need to go high until I have sense of balance. Basically bedridden most of time. Afraid depression setting in. See rheumatologist tomorrow.
Hi Sho-Sho
If you don't mind my asking ... what were the bad side effects you had on methotrexate ?
I'm taking it now and feel terrible...
Breathlessness... brain fog is worse...
Fluish feeling and so tired.
I have PMR since July 2017... started on 20 mg.s of prednisone... now at 10mg.s
Any one else have bad side effects from methotrexate ?
My liver enzymes are up after 7 weeks and I'm trying to decide if I should go off of it.
Thanks .
Hi - I just felt generally very unwell, fluey, utterly fatigued, even more than the GCA tiredness, almost unable to do anything. My blood tests, though were normal - so after four months I came off it and began to feel better quite quickly. I was on 22.5 mg of pred at that time. Also I lost half my hair which didn't help (being very vain so that combined with my moon face made me feel pretty depressed). The good news is now at 8mg, a year later, hair grown back and feel reasonably OK as long as I take life very easily and don't do much.
Good luck.
Hi Sho-Sho
I'm new to this forum and found this post about the side effects of MTX. Very, very recognizable!
What did you do with your hair when it was so bad? Did you use a hairpiece or a wig or something else? Did you go to a special hairdresser?
I'm losing so much hair the moment. I'm feeling very depressed about it... (and the moonface and the fat neck and the big tummy)
It's good to hear your hair has grown back. But a year seems so very long to wait...
Sorry about late reply been away for a few days - when my hair was at its worst my hairdresser suggested using dry shampoo as it thickens up your hair, it certainly helped to make it look much fuller.
I confess I did buy a wig but have never used it (it's my sort of insurance policy). My hair has now thickened up again, but I am afraid only after I came off methotrexate.
I know exactly what you mean though I hated going out for social occasions it really depressed me.
I have to keep reminding myself when I get down I will eventually get better but it is a bit of a life changer.
Good luck.
Thanks Sho-Sho. I allready use dry shampoo, and about everything else you can think off to get more volume in my hair. I try not to wash it too often because when I do it looks like most of it is coming off and that's soooo depressing. I'm thinking of buying a wig. Maybe just like you as a sort of insurance policy. (I like that idea.)
Anyway, it helps to talk about it with someone who really understands!
Courage,
Francien
Sho-sho
Thanks so much... helps to know that how I'm feeling is how you felt on the methotrexate . I will give this med a little more time and give up on it if no improvement.
I know how you feel about the moon face and hair loss ... I don't leave my house... don't want to be seen!!!!
Also I'm on oxygen from the prednisone due to breathlessnesss... quite the accesory😳
Hope your feeling ok today.
Hi,
I'm new to this forum and found your post about the side effects of MTX. It's sooo recognizable! Sometimes I'm so depressed with the moonface en neck an tummy, but the hairloss is the worst. I don't want to go outside anymore, but I have to from time to time and I hate it.
Now my rheumatologist wants me tot take leflunomide instead of MTX. But when I looked up the side effects it said ‘hair loss’!
What do you do about the hair loss? Do you go to a hairdresser? Do you have a hairpiece or a wig?
How are you doing? Still on the MTX?
Tapering
Tapering
Tapering, exhausted
Tapering………